Question 'cause obviously I'm not saying the right things

[scammermom]

I had (yes, previous tense) whose daughter was diagnosed with Aspergers at age 9. Up to then, we thought something was different about her but couldn't put our finger on it. She seemed to function fairly well getting As & Bs in school without behavior problems so I think that's how she flew under the radar for so long. Finally, one of the Girl Scout leaders finally convinced the mother to have her seen by doctors.

The mother kept trying to tell me how "very sick" her daughter was, how people weren't catering to her "special needs child". I guess we treated her as we always had. I didn't know we needed to treat her any differently suddenly. I also think the mother has some emotional issues even before this but not being a doctor, I can only speculate from the way she has handled this situations and ones in the past.

I didn't mean to be insensitive just apparently ignorant of this disorder. The mother pulled her daughter from our school because of the way "people were treating her" and put the girl into another public school. We will all be going to the same middle school in another year.

I guess I don't understand or what I could do better in the future.
Thanks.

 

[SandrainNC]

Hm. Well what does she mean by wanting people catering to her daughter? I want my son (he has Down syndrome) treated the same way as everybody else. I think that your treating her the same as you always have is a great thing!

Now, if the school was not giving her daughter the services she needs because of her SNs and that made her mad, then that is a different story. So it depends on what she was talking about I guess. I don't need people to cater to my son, but I would want him to get the services in school that he needs.

My nephew also has Aspergers. I don't think he was diagnosed until 16 because he type he has also has cognitive delay so it was hard to diagnose.

Sandra

 

[scammermom]

Ya kinda got me also about not catering to her daughter. That wasn't really clear to me either. I do know that she wanted her daughter to always go first in lines at school and be picked first because suddenly her daughter couldn't be allowed to wait (I've seen some Asperger's children who do have this issue but have never witnessed this with the girl in school, at Girl Scouts or even on playdates). She wanted an aide assigned to her daughter which the school denied based on the fact that 1) we have a few really difficult children who truly needed an aide and 2) she wasn't a behavior problem.

I guess I'm feeling a little guilty like I didn't do enough but I felt the mother's sudden behavior was a bit over the top. I know she had problems dealing with "her child has been labeled and yours hasn't".

 

[KirstenB]

I'm just guessing here, but it sounds like the mother is still "grieving". As far as what you could do differently, I can't comment, because I'm not there. Our youngest was dx'd with mild autism last summer. It was devastating. For the most part I've moved past grieving to acceptance, but there are days when it's still very fresh.

The person who was SOOO helpful to me was a friend who would simply listen. She didn't give me unsolicited advice. She did take the time to research a bit about autism. She asked questions.

On the other hand, my own mother and my priest both said "well she'll probably be a genius at something so everything will turn out well". I love them both dearly, but wanted to slap them both upside the head. Some kids with autism and Asperger's do have a sort of "savant" side to them, but I seriously doubt it's true in even 1/3 of cases. Unfortunately, I think the autism interferes with their potential to be their best, rather than increasing it.

I guess you have to decide if you want to be friends with this mom. PLease don't misunderstand me. It does sound like the mom might be a little flighty, which can definitely make it hard to be a friend to her. Anyway, if you want to be friends and helpful, ask her questions. When she complains about accomodations, ask her what would help her daughter. She may just be looking for a shoulder to cry on, or she may be looking for genuine change, I'm not sure.

 

[scammermom]

Thanks for both of your insight.

I tried to listen but all I got was rambling manicness and total flipping out. And this was before the girl was diagnosed officially. I know people don't want to know that something may be wrong with your child but we had tried to get her to some sort of doctor so they could help the girl if there was a problem.

Thanks for another perspective since we don't deal with this often and are somewhat clueless.

 

[KirstenB]

You're welcome, you sound like a kind person. Unfortunately, although the mom could probably use some friends, she sounds like a difficult person to be around. I think being the parent of a special needs kid makes you "more" of what you originally were. Clear as mud right?

If you were compassionate before your child came along, I think it makes you more so. If you were already a bit on the edge, it definitely can increase that. It changes you in ways that are hard to imagine.

 

[Schmeck]

Always being picked first, going first in line, etc is probably the worst thing to do to a child, as then the child will never learn to wait or realize that other people have feelings and would like to be first as well. I worked with a kindergarten teacher who would always let a few chosen students be first, ones that would pitch a fit and tantrum if they were made to wait. Needless to say, they never learned to take turns in kindergarten, and they would pitch fits over who of the chosen 3 was actually 'first'

So I made it seem cool to be in the back of the line, or in the middle, or anywhere but first, lol!

 

[minkydog]

Always being picked first, going first in line, etc is probably the worst thing to do to a child, as then the child will never learn to wait or realize that other people have feelings and would like to be first as well. I worked with a kindergarten teacher who would always let a few chosen students be first, ones that would pitch a fit and tantrum if they were made to wait. Needless to say, they never learned to take turns in kindergarten, and they would pitch fits over who of the chosen 3 was actually 'first'

So I made it seem cool to be in the back of the line, or in the middle, or anywhere but first, lol!

I agree that she is very likely still greiving and that can make you a little crazy and hypersensitive to every little slight. I am a believer in fitting the child for the road, not the road for the child. I have two children with disabilities: the oldest has severe ADD with learning disabilities & bipolar depression, the youngest is severely mentally handicapped and has seizures. Their needs are very different, but they will have to travel the same roads as everyone else in this world. My need to coddle & protect them is trumped by their need to be able to function as well as they can in the world. The Big Bad World out there is not inclined to let people go first or make a lot of accomodations for them unless they are forced to. That's why we must do all we can as parents to help our children learn to compensate for their differences.

Unfortunately, you probably won't ever see eye-to-eye with this person about her child. I would suggest you treat her child with the respect you always have and be a good listener. She has lost a precious thing, the myth that her child is "normal" and will be okay in the future. Her world has been turned upside down and she can't find her moorings. It may take her years to settle down and get on with her life. My youngest is 13yo and we are pretty laid back about him now. But you wouldn't have liked me those first few yrs

 

[bookwormde]

First I would like to thank you for taking the time to try to learn about Aspergers.

This comments you gave of the schools reaction pretty well shows that the school had no idea of the needed supports for an Aspersers student and was most likely in serious violation of the federal IDEA law.

“She wanted an aide assigned to her daughter which the school denied based on the fact that 1) we have a few really difficult children who truly needed an aide and 2) she wasn't a behavior problem.”

I do not have enough information to know if the mother was handling the situation the best way possible obviously the school was not.

The second thing that you need to consider is that it is likely that at least one of the parents had spectrum characteristics so reactions may not always mirror societal social norms and a lot of individuals have maladaptive manifestations, which have accumulated over year of excessive stress.

It does sound like the mother has never received the needed educations in Apergers to parent effectively by the items, which Schmeck referenced. I have “worked” with a few parents that sound like her, it just takes her joining a good parents Apsergers support group and/or reading some of the good clinical works on the subject to make a lot of difference.

If you still have interest I would strongly suggest buying and reading The Complete Guide to Aspergers by Tony Attwood C/2007 available on Amazon for $25, once you have read this you will be in a lot better position to “help” this mother or anyone else who is having difficulty with Aspergers. Maybe once you are done you can try loaning her your copy.

If you end up with a really strong interest, Tony Attwood (who is the worlds preeminent clinician on Aspergers is coming for a seminar to Philadelphia (Valley Forge) in November, both my wife and I are going as hopefully are a number of the educators involved with my DS 9 Aspergers.

Please feel free to keep asking questions there are lot of Autism spectrum parents and educators on the forum who will be happy to offer their insight.

bookwormde

 

[kaffinito]

The mother kept trying to tell me how "very sick" her daughter was, how people weren't catering to her "special needs child". I guess we treated her as we always had. I didn't know we needed to treat her any differently suddenly. I also think the mother has some emotional issues even before this but not being a doctor, I can only speculate from the way she has handled this situations and ones in the past.

I guess I don't understand or what I could do better in the future.
Thanks.

The only advice I could possibly give is to be patient with the mother. The mom seems to me to need more help than the daughter.

I agree with the pp who said that the mom sounded like she was still grieving too. Hopefully the mom will be able to parent and advocate for her child in a positive manner. I only hope her daughter never hears her mom refer to her as being "very sick"!

 

[kaffinito]

I'm sorry, soapbox time again. I disagree with what a pp said about the potential that an autistic child has, and I see the mom that the OP mentioned as having the "damaged child/no potntial" outlook, not a more positive approach to having an autistic child.

IMHO there are strengths that an autistic child has that regular kids don't have. For example, they have the ability to focus all of their concentration on one particular subject, topic or object. Autistic children also automatically "think outside of the box" (partially since they have no idea that the box exists, but still ). Autistic kids also see social behaviors/ habits that we don't see because we are so used to them. They make us think about the world in ways that never came to mind.

Remember, this is just MHO, but I see autistic kids as having a lot of potential, if we focus on the positives and gently correct the negatives.

 

[KirstenB]

Hey kaffinito, I think I'm the poster you're referring to when discussing potential. Obviously, I can only speak of my own daughter. She's come a huge, long way with her sensory issues in just one year. These sensory issues interfere with her ability to pay attention, rather than enhance it. Unfortunately, her expressive communication, and to a lesser extent, her receptive communication is greatly delayed. Both these issues, I attribute to her autism. Both of these issues I view as interfering with her potential. You and I can still disagree, but I wanted to state more clearly where I was coming from.

Our dd is almost 3, so there's still a lot of progress that can be made. I see your children are older, so hopefully you've already seen much progress.

 

[ireland_nicole]

I can see a lot of different people's points, and agree w/ most of the pp's, so I'll just add...
1. We don't always understand other people's intentions, frustrations, etc. While I do think mom has to learn more about the facts of her daughter's uniqueness, this is a process. In time, she will learn that although her daughter is "different" than typical, she's not "sick."

2. That being said, Aspergers is a very real difference "disorder" and as a mom I can tell you that is is very frustrating to hear people say - She's fine, there's nothing wrong with her b/c they see her in one specific setting w/ rigid structure for 20 min. There are very real modifications that she may require and her rights are protected by law partly b/c there are those that can look at a small part of the picture and say -she's fine, stop complaining. (not that that is or is not what you're doing, but the school obviously is, and she's probably responding to that)

3. Give her some time, some space, and some acceptance. You might be surprised. And good for you; I appreciate that you are taking time to ask questions and learn.

 

[kaffinito]

Hey kaffinito, I think I'm the poster you're referring to when discussing potential. Obviously, I can only speak of my own daughter. She's come a huge, long way with her sensory issues in just one year. These sensory issues interfere with her ability to pay attention, rather than enhance it. Unfortunately, her expressive communication, and to a lesser extent, her receptive communication is greatly delayed. Both these issues, I attribute to her autism. Both of these issues I view as interfering with her potential. You and I can still disagree, but I wanted to state more clearly where I was coming from.

Our dd is almost 3, so there's still a lot of progress that can be made. I see your children are older, so hopefully you've already seen much progress.

I'm really glad that your daughter has come a long way with her sensory issue in one year - that's really positive news! And yes, they do get better as they get older with the right school/home environment - which I'm sure your daughter has! . My youngest was having a lot of trouble with most forms of communication when he was three, and now can and will speak to just about anyone about almost anything, and is getting much better at give-and-take-conversations.

I did not mean to offend you, I just wanted to point out the strengths that autism, especially HFA can give a child. Our children's potential might be limited in some ways, yes, but as they get older they can learn new coping mechanisms that can help them function as well if not better in some ways than regular kids. I hope your daughter continues to show a great deal of progress, and that she thrives!

 

[Eeyores Butterfly]

I think you've gotten some great advice on this thread.

I disgaree with a pp who said that the school is probably breaking the law. Now, obviously I was not there at the IEP meeting, but I most children with Asperger's do not need a full time aide. That can actually be more detrimental if the child does not have severe needs. Very few children actually a need a para, as long as the teachers are well trained and are doing inclusion properly. If the child is understanding the curriculum and is not having behavior issues in class, typically a para is unnecessary. I see paras the most when the child has a physical need (such as being in a wheelchair and they need somebody to help them navigate or get supplies), has cognitive delays that interfere with their ability to learn the curriculum without more intense help, or have behavior needs that need a one on one situation to address (such as running away). Every child I've known in our school system has done well without a para.

Based on your description, it sounds like the mom went very overboard in her requests of the school and others when it came to her daughter. I have talked with many parents of children in special ed who specifically request that their child be treated like every other child.

One of the things we had to learn about in our special education classes is the grieving process, and that could be playing a large part in your friend's behavior. Here is a link that talks about it. The important thing to remember is that even though there are stages, it does not follow a linear progression. A person can skip stages or revert back to stages. It sounds like your friend is in the anger stage of the process.

 

[scammermom]

It is so good to hear how "normal" parents are accepting and helping their children since each is such a treasure and unique in their own ways. You all have been a great help and hopefully someday, the mother will come to realize that her friends wanted to help her. She has alienated almost everyone and pulling her daughter so suddenly from our school. From what I've heard, she's not making many friends at the new school either with her anger (thanks for putting the right word out) and her sense of entitlement.

 

[Eeyores Butterfly]

Sadly, in situations like these it is the child who suffers. It's not right, but there are many places where people are less willing to be patient or work with the child because the parents have ticked everybody off.

 

[KirstenB]

I'm really glad that your daughter has come a long way with her sensory issue in one year - that's really positive news! And yes, they do get better as they get older with the right school/home environment - which I'm sure your daughter has! . My youngest was having a lot of trouble with most forms of communication when he was three, and now can and will speak to just about anyone about almost anything, and is getting much better at give-and-take-conversations.

I did not mean to offend you, I just wanted to point out the strengths that autism, especially HFA can give a child. Our children's potential might be limited in some ways, yes, but as they get older they can learn new coping mechanisms that can help them function as well if not better in some ways than regular kids. I hope your daughter continues to show a great deal of progress, and that she thrives!

Believe me, no offense taken! Since there is a broad spectrum, we're all bound to have different experiences, hence, different conclusions. We adore our youngest ddd Zoe with all our hearts!!
I'm aware that ASD kids, especially kids with Aspergers often have special gifts. I haven't witnessed any special cleverness with Zoe, but there's always hope. Right now, we're just trying to help her manage and overcome the things that interfere with her engagement with others. I feel hopeful in hearing about your son, and hope our Zoe progresses as well as he has.

 

[bookwormde]

Eeyores Butterfly,

From your post

“I disagree with a pp who said that the school is probably breaking the law. Now, obviously I was not there at the IEP meeting, but I most children with Asperger's do not need a full time aide. That can actually be more detrimental if the child does not have severe needs. Very few children actually a need a para, as long as the teachers are well trained and are doing inclusion properly. If the child is understanding the curriculum and is not having behavior issues in class, typically a para is unnecessary.”

If your quote above relates to the general education setting I do not know how you would meet the nonacademic curriculum needs many Apsergers children. Certainly not all Aspergers children need a 1 on 1 or a part time para throughout their school careers but a large percentage do need it at some point and for some needs.

My point was that the reasons quoted for not considering the para did not include the review for the child’s non-acedemic curriculum needs which are the most common area off needs that if fully implemented in the general education setting require some level of para support.

The amount of time required per day to implement the generalization portion of the non academic curriculums, with children with significant needs in this area, are not practical to remove from the classrooms teachers time without depriving the rest of the classes needs for their education. Also even in elementary school many schools have children moving beyond their “home room” teacher for at lest one time throughout the day not to mention less structured times such as lunch, recess and transitional times. As children transition into later school year there are a multitude of teachers, where it is just not practical to have all these teachers trained to the level needed to provide the non-academic needs without a para even if they have the time.

None of us know details about the situation, so all I can do is go by the quote supplied.

If the child was in a special class situation with a small class with a low teacher to student ratio and highly trained staff that was fully meeting both the academic and non-academic needs for an appropriate education then I would say we could be certain that the mother’s reaction was inappropriate. Maybe the OP can provide us with some more insight into the situation. If the child was in a mainstream classroom then I still think that it is likely that the school was not meeting the child’s needs for an appropriate education, particularly in the area of non-academic curriculum generalization.

Also well trained paras who know how to provide the level of needed support while allowing the child to “grow” are not detrimental, poorly trained paras who hover and do not allow their students to learn from new challenges are detrimental.

I guess in the end it is the school’s both professional and legal responsibility to meet the child’s needs for an appropriate education, not the parents. Some time the parents interfere with this but where the school is fully meeting the needs of the child using all available resources this is rare in my experience.

KristenB,

OT

As you know no 2 people on the spectrum are the same but all have spectrum wiring in their brain, which gives them the potential “special” abilities. Whether these abilities manifest themselves depends on their cognitive, communicative and developmental level and the impact of supports that they receive.

It would be rare for any child to demonstrate the most common “positive” manifestation at your daughter age other than in their general nature. This usually starts at the 6-10 year old range except in rare “savant” situations.

You are doing great and are focusing in the area which are appropriate for her age (communication and sensory) and are needed for future progress the social, TOM and EF issues and can be worked on much more efficiently only after progress in these base areas. Receptive communication is greatly impacted by the non-linear wiring of the spectrum brain’s processing and memory and the different EF system that it iincludes (which is also where much of spectrum children’s special abilities come from). As you work through the supports in these areas the situation will improve but the underlying wiring will not change, she will just adapt the world to her needs (using visual images and other non linear structures in place of verbal linear memory).

Non of us know what level of their potential our spectrum children will obtain, all we can do is to support them to the best of our ability, I would be surprised with your commitment to getting the maximum supports for your child if you did not have some wonderful “special characteristics and abilities” moments in your future.

bookworm

 

[kaffinito]

Also way OT!

Believe me, no offense taken! Since there is a broad spectrum, we're all bound to have different experiences, hence, different conclusions. We adore our youngest ddd Zoe with all our hearts!!
I'm aware that ASD kids, especially kids with Aspergers often have special gifts. I haven't witnessed any special cleverness with Zoe, but there's always hope. Right now, we're just trying to help her manage and overcome the things that interfere with her engagement with others. I feel hopeful in hearing about your son, and hope our Zoe progresses as well as he has.

If you keep working on it, you will see a "special cleverness" emerge! John didn't exhibit any positive mental or functional characteristics at that age either. Now he is, and he started at the age of 5-6 with a fascination with history - specifically Civil War history. Now his interests have broadened to art and science. It comes with time, and when kids are in a positive learning/home environment and are identified at an early age, then I believe a lot more progress can be made. Enjoy your daughter! She will surprise you I think!